How I Explain Endometriosis Pain to Someone Without Endo

A podcast host recently interviewed me for a segment about endometriosis pain. Specifically, she wanted me to describe my symptoms in a way that the non-endo crowd could understand. I used words like burning, throbbing, stabbing, aching, pulling.

But she insisted that I tell her what all of that really feels like.

I should have said: "You know, like sometimes a tiny troll is inside my pelvis, lighting it on fire, stabbing around with a small dagger, and yanking out my uterine lining, one piece of tissue at a time. Sometimes this menstrual monster puts a vise grip on my right hip and uses my ribs like monkey bars".

Instead, I tried to make comparisons to other conditions that people with or without endo may have. That inspired me to create a longer list I could use to describe my endometriosis pain symptoms in the future.

Endometriosis pain comparisions

Period pain

A lot of people with periods have had cramps at one point in their menstrual lives. So, I usually have a lot easier time describing my period pain to these folks.

But if you aren't a menstruating person, imagine endometriosis period pain feeling like:

A pelvic migraine

For me, a migraine attack feels like someone stabbed an icepick on one side of my brain. My head and neck throb.

I also get blurry vision and feel sick to my stomach. The pain is so immense that it seems like it's happening throughout my whole body.

It's similar to period pain. I'll get a stabbing in my lower right side with intense throbbing pain throughout my entire pelvis.

That pain goes down through my thighs and up my back. Sometimes I get blurry vision and feel like I have to throw up.

The pain seems like it encompasses every cell in my body.

Getting your testicles smashed

I don't have a penis. But my husband tells me that every person he knows with one has had their testicles hit hard at least once.

He describes it as a "full-body experience that makes you sick to your stomach." That is spot-on for what my period pain feels like.

Catching the flu

I actually get both flu-like symptoms and menstrual cramps. I'll get body aches, joint pain, and serious fatigue. That's on top of the migraine in my pelvis.

Ovulation pain

According to the nurse I talked to at the ER when I was 16, ovulation pain presents itself pretty much exactly like appendicitis. My symptoms always include sharp pains in my lower right side.

Occasionally I'll get nauseated or have diarrhea. But unlike appendicitis, I don't get a fever.

It's also kind of like having a very serious gas pain. You might think that's not so bad.

I've had gas so severe I almost went to the hospital, but the pain was so sharp I couldn't walk to the car to get medical help. I always have Gas-X around now.

Pelvic floor tension

I have general tightness in my pelvic floor. I also have several trigger points.

These are lumps where the muscle tissue is particularly tight, and they hurt when pressed. Sometimes scar tissue is involved.

When I tell people about this tightness, I ask them to imagine pressing on a really sore muscle after a workout, except it's happening during sex or a vaginal exam.

Or, if you carry tension in your back or shoulders, imagine having one of those stress knots around your uterus or vagina.

Pelvic floor therapy has helped ease a lot of my tightness. And my current pelvic floor therapist is using visceral manipulation to help me release my trigger points.

Some pain is easier to explain

Nausea

I already touched on this with my period pain. But it deserves its own entry.

There are several ways endometriosis makes me feel sick. In addition to period pain, muscle tension, endometriomas, I have had blood-filled cysts on my ovaries I've had surgically removed twice, which has also caused nausea.

Here's a non-endo example of what that feels like: I fractured my arm once and almost vomited. The muscle tension trigger point and cyst-associated nausea are a lot like that.

Friends and family who've broken bones describe a similar experience.

Diaphragm-area cramp

This pain is an easy one to describe. It feels exactly like a side stitch you might get while running. These cramps can show up out of nowhere or during exercise.

I get this cramp far less often since my latest excision surgery. I didn't have endo on my diaphragm, but my doctor removed scar tissue that glued my abdominal wall and intestines together.

So far, this seems to have practically eliminated this cramp.

Hip, leg, and foot pain

I get pain in my right hip that radiates down my leg, through my knee, over the top of my foot, and into my toe. It's worse the week before my period.

According to many talks I've had with my late 79-year-old stepfather, my leg symptoms are similar to his sciatica. In fact, that's what one of my physical therapists treated me for.

The exercises she taught me helped ease the pins and needles, pain, and numbness I'd get at night or in the morning. But this particular symptom is also similar to other forms of inflammatory pain, such as tendinitis.

This pain is much less severe since my recent excisions surgery. I no longer have trouble walking in the morning.

Lower back and tailbone pain

I can't sit up straight, like in an office chair, for very long. Well, not without my lower spine yelling at me.

I also sometimes get morning stiffness in the same area. In the medical community, this is called the "gelling" phenomenon.

These symptoms are common for people with inflammatory arthritis, such as those with rheumatoid arthritis, psoriatic arthritis, or axial spondyloarthritis. I've never been diagnosed with any of these conditions, but folks who have been always know exactly what I'm talking about.

If you've got tips on how to explain how your pain feels, let us know!